Family Living with Cerebral Palsy

Wednesday, March 19, 2014

James has had a fairly healthy winter. Unfortunately a few weeks ago he came down with pneumonia. After 2 days of fatigue, fever and nebulizer treatments I took him in to the doctor. I honestly thought he was going to be admitted to the hospital, but he lucked out. His O2 sats were a little low at 93% but he was holding steady there. We increased his nebulizer treatments, re-started his asthma medications, started an antibiotic and a steroid. After 3 more days he finally was feeling better. We were fortunate enough to use Sanford's new Same Day in which you get to see your own physician on the day you call. I don't doubt other physicians but when it comes to James it really helps to streamline his care when we see his own physician. Normally I think most physicians would've asked for and x-ray and maybe labs but our pediatrician decided that no matter what the x-ray would've shown he was going to treat it aggressively anyway. James has a poor history of doing a very good job of compensating during illnesses. Which is good, but unfortunately at some point he can't compensate anymore and that's when things go south very quickly.
We went for a follow-up a week after and the pneumonia was gone, but unfortunately his O2 sats were still only at 92%. We did an x-ray (which is not the easiest experience at Sanford SW Peds). The pneumonia is gone for sure but he saw a lot of inflammation which means that James' asthma isn't well controlled. We increased his Pulmicort and go back in a month for another check. At that same check-up we'll be checking James' weight. I think at long last our years of avoiding a G-Tube are over. If James' shows no weight gain by that appointment, it's time for a G-tube. Andy and I have mixed feelings on it, but we'll do anything that James needs.

Tuesday, January 28, 2014

I'm obviously WAAAAYYYY behind on this post. But here's a quick run-down of our summer vacation.
We left on a Thursday night. I got off work a little early, but we only got as far as Watertown, SD. That left us with driving all the way to Clarksville, TN the next day. We drove straight south along the border of Iowa, Nebraska, and Missouri and then over to Illionois and across Kentucky all in one day. Surprising our kids were amazing in the car. Having the DVD player in the van is a lifesaver for sure. The kids sure do travel well.
Saturday we had some fun in the pool before getting ready for my cousin Troy's wedding. It was a great ceremony and we headed over to the reception that had an amazing view! The kids had loads of fun dancing and seeing their cousins. It was also a great chance for Andy and I to visit with some of my relatives that we don't see very often.
Sunday we went to church but unfortunately had to get back on the road again right away.
We drove to southern Georgia and stayed there a night. Monday we only had a few hours of driving and so we decided to stop at Daytona Beach to see the ocean! Elliot loved all the sand but wanted NOTHING to do with the water. James liked it all. James and I hung out in the sand and a little down by the water-but mostly I just sat on the sand and James laid in my lap and we played in the sand. I thought he might get upset because the sun was so bright but he did awesome. I tried my best to remember to pack everything. Well, I forgot floaties for the water, sunscreen, beach towels and hats!! We remembered Elliot's sunglasses and took a short walk to buy some sunscreen and beach towels...but still forgot to get a hat for James.He got to put his feet in the water and he got his legs covered with sand. Elliot only wanted to make a sandcastle. He also went on a walk with Dad down the beach to look for shells-no luck there. About the time we were leaving it started to rain so we finished up our drive to Ft. Lauderdale where we were headed for some ABR training.
ABR training went well. This was Andy's first time. He got to meet the trainers and ask all the questions he'd been asking me for months (but wouldn't believe me when I gave him answers). We learned 6 new exercises. Wow-that's a lot of exercises. Our target is to spend 2 hours a day on James but we're finding it difficult. I am the one who is the most comfortable with ABR and the pushing drive behind it...but I don't see James :( The ABR time I do spend with him is while he's sleeping after I get home from work. We spent 2 days doing ABR and got in a little time in the pool while it wasn't raining. It rained, and I mean rained, all day both days. There were a few flash flood warnings around us. Unfortunately we weren't able to get out and see much because of the rain but just relaxing in the pool and hotel room was ok too.
After ABR we headed back to ND. We made it in 2 days! We drove as far as Clarksville, TN the first night and then the rest of the way home the second day. It felt good to be home.

Sunday, January 26, 2014

Once again Halloween (and a couple other holidays...) has come and gone and I haven't posted yet. This year the boys had fun again. I chose a fireman costume for James that I found at Costco. It was a great quality. The fabric was thick and it was made really well. I don't think even Elliot could ruin it. James wore his costume to school and loved it! His teacher told me that when they put him in his stander they put him in front of a mirror and he just couldn't stop looking at himself! HAHA! In the afternoon I was able to go to James' school and paint pumpkins with him in his "inclusion" classroom. James was way too busy watching all of his friends and did absolutely no painting. It was fun to see his teachers and classmates interact with him. His classmates and teachers really do include him and love seeing him!
Elliot was the Red Megaforce Power Ranger this year. He talked about being Ironman (again) for months but when we went to buy his costume (also at Costco) he insisted on the Power Ranger. He loved it and later I found that I had extra costumes in the basement that someone must've given us last year (thanks whoever gave us those! I have no idea who it was!). Wouldn't you know that one of the costumes I already had was a Red Power Ranger! Elliot made Daddy put on the mask and be a Power Ranger with him for awhile.
We chose to go to the mall again this year for Trick-or-Treating. It's easiest with James because there are no steps etc and we don't have to worry about that stuff. He wasn't into it much but Elliot loved pointing out all the other costumes and getting candy. James, as always, loved watching all the other kids running around and laughing. After the mall we took a short trip to see my co-workers. On the way home James and I dropped Daddy and Elliot off a couple blocks from home so that Elliot could do some more trick-or-treating. He loved going the houses and seeing all the decorations! All in all it was a pretty successful Halloween. Maybe James will be more into it next year...or maybe he and Mom will just hang out at home in costumes :)

Wednesday, September 25, 2013

So I'm a bit late with this post. My tiny baby boy is all grown up and goes to all day long Kindergarten. We were able to meet most of the people that are involved in James' school day on the day before school. We met them all and taught them all about James and what he likes and dislikes. I found that so helpful! I think they did too. For the first couple weeks there were lots of phone calls to mom to find out even more about James. He is adjusting very well to all day school. The first couple days were the toughest. James gets on the bus at 7am every morning and gets home at 2:30pm. That's a long day for a little boy-especially one who is so busy at school. His day is pretty jam-packed at school. He spends the majority of his time in the Special Education classroom but gets integrated into his own classroom for group times like snack, phy-ed, art etc. He is loving the group reading time in his classroom and his teacher reports to me that the students that sit in his pod with him have become very protective of him! In the morning before school starts he is in the gym with all the other kids and his para and it sounds like all the kids love to hang around James and help him and push his chair. Other things on his agenda each week are 100 minutes of speech therapy, 60 minutes of therapy with the deaf and hard of hearing services, 60 minutes of Occupational Therapy, 60 minutes of Physical Therapy, and 60 minutes of Adaptive Phy-Ed. That's all in addition to his regular school day in the classroom/special ed classroom! Last week his teacher reported to me that he identified the sounds for the letters "F" "M" and "P" He is still strongly motivated by the computer and iPad and is using those frequently to complete his schoolwork. His team of teachers is working really hard to find the best ways for James to communicate his knowledge and wants to us. Just today they had an evaluation with the assistive technology person for the school district. They got a switch to help James use his iPad more effectivly and are exploring other options-even having an evaluation for an eye gaze computer system for him to use!!! Wow! I can't believe how much has happened for James in other a couple of short weeks at school. I can't wait to see what else he'll teach us this year!

Monday, August 12, 2013

Tragedy struck a town close to us last week that reminded me of the dangers of having a child with special needs that I'd rather forget. An 11-year old autistic boy wandered from his home and was found the next day in the river. How tragic. I cannot imagine the grief his family is experiencing. When I heard the news I wanted to break down and cry.

While I know that right now this isn't something that could happen to James, it reminds me of how vulnerable he really is. He can't scream for help, he can't get up and walk away from danger, he can't stop himself from falling off his bed. I think as a special needs parent I'd rather forget these things. We have so much going on already from school, to therapy to feeding that it's easy to forget, or take a passive approach, to safety.

Since James is not mobile that saves us a lot of headaches when it comes to safety. We know he isn't going to wander off in the neighborhood or fall down the stairs. But there are some areas that I know I'm lacking in and I can no longer ignore. The biggest one I can think of is James' bed. When we moved into our new house several months ago we bought the boys bunk beds. I knew that when we put James in a regular twin bed that I was going to need to buy a railing so he wouldn't fall off. But I haven't done it yet. Moving James into a twin bed was a safety decision in and of itself. He was getting his arms and legs caught in the railings of his crib and I was afraid he would break a bone. So to the big boy bed we went. Most of the time he's ok in his bed. But he has fallen out and he has gotten his hands stuck underneath the mattress and scraped up his knuckles. This week I am buying a railing for his bed.

Another recent thing that's popped up is James' safety on our couch. He spends a good amount of time lying down on our loveseat-that's James' spot. I've never thought much about James falling off-he can't roll, so he can't fall off. Wrong. Twice last week he fell off the couch. He wasn't hurt either time, in fact the second time it happened he was just content to be on the floor. I need to make sure I'm closer by when he's on the couch now.

The last big safety issue I can think of is James' special tomato chair. It has a harness-so it should be safe right? Wrong. We don't use the entire harness. After we moved to our house I couldn't find the pelvic portion of the harness so we weren't using it. Well James has gotten pretty tall and when he arches his back (when he's excited mostly) he pushes on the floor with his feet and is close to pushing himself out of his chair-while it's not a big deal and it wouldn't be a fall very far, it still isn't safe.

All in all every parent has to worry about the safety of their kids. I worry about Elliot getting out the front door/garage door on his own and rushing to the street. But those of us with special needs children need to remember that our children are much more vulnerable and we need to be more vigilant and not forget or get passive about the safety of our children.

About Me

I am the mother of 2 little boys. James is our first and has cerebral palsy due to being premature. Elliot is our second and a healthy little boy. Our family lives in Fargo, ND where my husband and I both work. We strive to be a family and keep our lives balanced between work and family.
James has a pretty severe form of cerebral palsy. He is completely non-mobile and non-verbal. He has low trunk and head control and high tone in his extremeties. James also has mild-moderate hearing loss for which he wears hearing aides.